Editorial: Cancer prevention, treatment and survivorship in the LGBTQIA community

Sexuality and gender minorities (SGM), including those who identify as lesbian, gay, bisexual, transgender, queer, and intersex (LGBTQI+), constitute a growing and underserved population in the realm of cancer care. This community faces a greater burden of cancer and encounters distinctive psychosocial challenges. These challenges include elevated rates of cancer-related distress and sexual concerns, reduced quality of life (QOL), and diminished support from their biological families, when compared to non-LGBTQI+ individuals with cancer and their caregivers. Concurrently, LGBTQI+ individuals also experience heightened dissatisfaction with cancer healthcare, which encompasses difficulties in communication with healthcare professionals (HCPs), barriers in accessing cancer services, and a lack of LGBTQI+-inclusive cancer information or support. Revealing their sexual orientation or gender identity (SOGI) to HCPs is a significant source of distress due to concerns about potential hostility or cis-heteronormative biases that might result in substandard care. However, if SOGI is not disclosed, LGBTQI+ individuals with cancer are more likely to report unmet needs, a sense of invisibility, dissatisfaction with care, and poor psychological well-being

Adoption and cancer survivors: Findings from a learning activity for oncology nurses

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/113172/1/cncr29322.pd

Advantages, Disadvantages, and Lessons Learned in Conducting Telephone Focus Groups to Discuss Biospecimen Research Concerns of Individuals Genetically at Risk for Cancer

Advances in telecommunication technology allow biomedical researchers to explore new, inexpensive opportunities for conducting focus group research. This article reports our experiences using such technology to engage individuals genetically at risk for cancer about biospecimen research. Telephone-based focus groups were conducted with a total of 40 individuals, and participants were asked about their experiences and perceived benefits and limitations of participating in a telephone focus group about biospecimen research. The lessons learned can effectively be applied to other areas of health research. In particular, this method may be most useful to engage individuals who are less apt to speak in public, and/or when there are concerns over privacy if face-to-face discussions methods are used

Lessons Learned: Feasibility of a Discussion Prompting Tool to Increase Fertility Risk Discussion Among Adolescent Oncology Families

The purpose of this study was to explore the feasibility of distributing a prompting tool (stress egg) in order to increase discussions about fertility risk and preservation (FP) among female adolescent oncology patients, parents, and healthcare providers (HCP). 200 eggs were distributed to four pediatric oncology centers. Qualitative interviews were completed with healthcare staff (N=7) after 6 months of distribution to newly diagnosed female oncology patients ages 12-18. Interviews showed that the main barriers to distribution of the prompt were: forgetting to distribute the eggs; uncertainty about the significance of fertility; and uncertainty about fertility issues in general for female adolescent cancer patients. The scientific community must continually explore effective avenues of communication to ensure such information is received. The stress egg has potential to impact a cancer survivor’s outlook on future partnering, family life, and self-concept when used in conjunction with policy

The Photo Essay: A Visual Research Method for Educating Obstetricians and Other Health Care Professionals

When it comes to issues related to low-income women seeking early, adequate, or continuous prenatal ca re, the public health and medical communities continue to tell women to take responsibility for their actions. Rarely are messages aimed at providers. To help physicians see how factors in their offices and clinics can affect service utilization, the photo essay, a visual qualitative research strategy was developed using low- income minority and disenfranchised women who had recently given birth or were near to giving birth. Eight photo essays were completed. Together, the narratives, in collaboration with the photos, provided an opportunity for physicians to hear and observe women, as consumers, as they expanded their descriptions of their prenatal care experience

Promoting Pre-conceptional use of folic acid to Hispanic women: A social marketing approach

Objective: To develop a culturally appropriate communication initiative in an effort to promote the use of pre-conceptional folic acid among Hispanic women of childbearing age. The materials were designed to communicate information about the risks of neural tube defects and the value of folic acid supplementation before conception. Methods: The initiative was developed using a social marketing approach. A series of focus groups were conducted with Hispanic women, particularly Mexican and Mexican-American women, to gain an understanding of their knowledge, attitudes, and behaviors regarding birth defects and folic acid. Additionally focus groups assessed women's preferences for existing folic acid education materials. Qualitative analysis of coded transcripts revealed key themes which were incorporated into a multi-media initiative. Results: Critical themes of the research highlighted the need to include the role of partners and a sense of family in the promotions aimed at these groups. Another key component was the need to dispel myths which act as barriers to preconceptional folic acid use. Other important elements included in the media products were the need for Spanish and English versions, an explanation of neural tube defects, and a reference to the cost of the supplements. Conclusion: The final products of the initiative included Spanish and English versions of a brochure, photo-novella, and radio public service announcement. Pre-testing results showed women understood the message, thought the message was for women like them, and expected to begin taking a folic acid supplement. Results of the overall evaluation of the initiative are on-going

I need more knowledge : Qualitative Analysis of Oncology Providers\u27 Experiences with Sexual and Gender Minority Patients

Background: While societal acceptance for sexual and gender minority (SGM) individuals is increasing, this group continues to face barriers to quality healthcare. Little is known about clinicians\u27 experiences with SGM patients in the oncology setting. To address this, a mixed method survey was administered to members of the ECOG-ACRIN Cancer Research Group. Materials and methods: We report results from the open-ended portion of the survey. Four questions asked clinicians to describe experiences with SGM patients, reservations in caring for them, suggestions for improvement in SGM cancer care, and additional comments. Data were analyzed using content analysis and the constant comparison method. Results: The majority of respondents noted they had no or little familiarity with SGM patients. A minority of respondents noted experience with gay and lesbian patients, but not transgender patients; many who reported experience with transgender patients also noted difficulty navigating the correct use of pronouns. Many respondents also highlighted positive experiences with SGM patients. Suggestions for improvement in SGM cancer care included providing widespread training, attending to unique end-of-life care issues among SGM patients, and engaging in efforts to build trust. Conclusion: Clinicians have minimal experiences with SGM patients with cancer but desire training. Training the entire workforce may improve trust with, outreach efforts to, and cancer care delivery to the SGM community

Formative Research on Perceptions of Biobanking: What Community Members Think

Preparing healthy community members with timely communications prior to engaging them in a request to donate biospecimens promises to improve the experience of biobanking participation. To this end, a qualitative study was conducted to assess community member knowledge, attitudes, beliefs, and informational needs about cancer-related biospecimen collection in a large metropolitan area in southwest Florida. The study utilized purposive sampling techniques to recruit a total of 95 participants to participate in 12 focus groups, segmented by race/ethnicity and language preference (mixed race, African American only, and Spanish speaking) and age (18–29, 30–54, and 55 and older). Focus group interviews were analyzed using content analysis to identify emergent themes. Overall, participants in the 30 years and older groups were favorable toward participating in biobanking if their concerns were addressed, such as confidentiality and consent issues, in contrast to participants aged 18–29 who were more skeptical. For all participants, the desire to participate in research that seeks new cancer treatments outweighed mistrust. Moreover, many cited the potential scientific benefit for future generations as a primary motivator. Finally, in some groups a therapeutic misconception was expressed, where participants expressed a willingness to forego confidentiality of their health status in exchange for therapeutic benefit. This study contributes to the literature on community perceptions of the benefits and barriers of biobanking and adds to the development of meaningful education communication priming tools to advance understandings about biobanking

Increased Population Prevalence of Low Pertussis Toxin Antibody Levels in Young Children Preceding a Record Pertussis Epidemic in Australia

Background: Cross-sectional serosurveys using IgG antibody to pertussis toxin (IgG-PT) are increasingly being used to estimate trends in recent infection independent of reporting biases. Methods/Principal Findings: We compared the age-specific seroprevalence of various levels of IgG-PT in cross-sectional surveys using systematic collections of residual sera from Australian diagnostic laboratories in 1997/8, 2002 and 2007 with reference to both changes in the pertussis vaccine schedule and the epidemic cycle, as measured by disease notifications. A progressive decline in high-level ($62.5 EU/ml) IgG-PT prevalence from 19 % (95 % CI 16–22%) in 1997/98 to 12 % (95 % CI 11–14%) in 2002 and 5 % (95 % CI 4–6%) in 2007 was consistent with patterns of pertussis notifications in the year prior to each collection. Concomitantly, the overall prevalence of undetectable (,5 EU/ml) levels increased from 17 % (95 % CI 14– 20%) in 1997/98 to 38 % (95 % CI 36–40%) in 2007 but among children aged 1–4 years, from 25 % (95 % CI 17–34%) in 1997/98 to 62 % (95 % CI 56–68%) in 2007. This change followed withdrawal of the 18-month booster dose in 2003 and preceded record pertussis notifications from 2008 onwards. Conclusions/Significance: Population seroprevalence of high levels of IgG-PT is accepted as a reliable indicator of pertussis disease activity over time within and between countries with varying diagnostic practices, especially in unimmunised age groups. Our novel findings suggest that increased prevalence of undetectable IgG-PT is an indicator of waning immunit

Cancer Patient and Provider Responses to Companion Scales Assessing Experiences With LGBTQI-Affirming Healthcare

Background: Sexual and gender minority (SGM) persons are at a higher risk for some cancers and may have poorer health outcomes as a result of ongoing minority stress, social stigma, and cisnormative, heteronormative healthcare environments. This study compared patient and provider experiences of affirming environmental and behavioral cues and also examined provider-reported knowledge, attitudes, behaviors, and clinical preparedness in caring for SGM patients among a convenience sample. Methods: National convenience samples of oncology providers (n = 107) and patients (n = 88) were recruited separately via snowball sampling. No incentives were provided. After reverse coding of appropriate items for unidirectional analysis, lower scores on items indicated greater knowledge, more affirming attitudes or behaviors, and greater confidence in clinical preparedness to care for SGM patients. Pearson chi-square tests compared dichotomous variables and independent samples t-tests compared continuous variables. Other results were reported using descriptive frequencies. Results: Both patient and provider samples were predominantly female sex assigned at birth, cisgender, and heterosexual. Providers were more likely than patients to report affirming cues in clinic, as well as the ability for patients to easily document their name in use and pronouns. Providers were more likely to report asking about patient values and preferences of care versus patients’ recollection of being asked. Patients were more likely to report understanding why they were asked about both sex assigned at birth and gender identity compared to providers’ perceptions that patients would understand being asked about both. Patients were also more likely to report comfort with providers asking about sex assigned at birth and gender identity compared to providers’ perceptions of patient comfort. SGM providers had greater knowledge of SGM patient social determinants of health and cancer risks; felt more prepared to care for gay patients; were more likely to endorse the importance of knowing patient sexual orientation and gender identity; and were more likely to indicate a responsibility to learn about SGM patient needs and champion positive system changes for SGM patients compared to heterosexual/cisgender peers. Overall, providers wished for more SGM-specific training. Conclusion: Differences between patient and provider reports of affirming environments as well as differences between SGM and heterosexual/cisgender provider care support the need for expanded professional training specific to SGM cancer care